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New here- looking for some guidance and support

long story short- 56 yr old male, 6-4, 285 pounds in October 2015.
Started having frequent night urination, getting progressively worse over the next couple months to as much as 5-6 times a night.
Back pain and leg pain started in December, getting to the point where sleep was an issue daily.
Finally broke down and went to the urologist in mid February, and he put me on Flowmax, did the DRE, and took a PSA.
A week later they call and tell me it is 358 - and they want to re-take to ensure it is not a bad test.
Last week went back for the retake, and now it is up to 618 - in 4 weeks!!!
So biopsy is scheduled for Monday 4/4 - and my wife and I are scared to death.

Re: New here- looking for some guidance and support

If he did a DRE then took blood same day, that will result in a higher than normal number (rumor of ~50% higher in some cases). I'd do the biopsy at some point - but based on what I've studied, a general MRI of the prostate and surrounding lymph nodes first is a really good idea; followed by a transrectal MRI.

That process turns the TRUS biopsy from a random shot in the dark to a real diagnostic procedure.

Flip side is that if the DRE was positive, the TRUS guided biopsy may be able to see what the doctor felt - leading to a better chance of discovery.

BUT - Prostatitis can cause extremely high PSA levels ... and is treated with simple high grade antibiotics over six months. A slide culture of prostate fluid is all it takes to find this. An unpleasant DRE like procedure... but a heck of a lot better than a biopsy.

Re: New here- looking for some guidance and support

As you know this site is a great place for advice and support from those who have been through the process (and continue to do so). There is a lot of collective knowledge to tap into. Note that this situation is unique for every person and there is always hope. Keeping a positive attitude is something that is important and reading through this site will tell you that many have learned how to do that. That all being said, it is very important to take this very seriously. In your case, it appears to be very rapidly progressing whatever the cause - providing there were no outside sources influencing the test results as another has suggested here. Bike riding, DREs, infections, and intercourse all can affect the results of a PSA test. Hold that thought and eliminate all those less serious possibilities to have an accurate test result before proceeding further but do aggressively search for the cause. Biopsies are not fun, but tolerable. By all means do that if all the lesser possibilities have been eliminated. Doing a biopsy on a healthy prostate is not advised if there are lesser causes left unexplored. It is a major trauma to such a small organ. For that reason, it should be the last resort in the diagnosis process. Wishing the best for you - remember, I am NOT an expert by any means, just a fellow victim who has "been there". YANA, Jon R.

Re: New here- looking for some guidance and support

so the first PSA the urologist did the DRE then 5 minutes later they drew the PSA.
The next test, the 2nd one - there were no outside potential influences that you have mentioned that would have influenced the score.
i have read your comments on the possibility of prostatitis and after extensive searching I see no data on a psa in the hundreds caused by that - please direct me to it if i am wrong.

Re: New here- looking for some guidance and support

I think there is some confusion about the effect of sex, riding a bike or getting a DRE before a PSA test. Those activities might push your PSA up from 3 to 5 but not to 20 or 100.

Re: New here- looking for some guidance and support - (re. Frank)

Thanks for that PSA fact Frank. Just another example of the facts and information one can pick up on this site from its many members. Jon.

Re: New here- looking for some guidance and support - (re. Frank)

My PSA is only 76 at this point, but a pelvic MRI was just completed and clearly shows where my doc will focus his next biopsy... I'll know more in about 10 days (must be off all nsaids which I use for a few compressed discs).

I recommend you have the MRI first, unless the DRE detected a lump that is visible by ultrasound, a biopsy is a shot in the relative dark.

I've had one clinic 12 needle; while I tolerated it and had no complications, it was a pain in the ass. I avoided additional biopsies because they seemed so random.

Because of the MRI is showing a clear target to focus on, my next saturation biopsy is under full anesthesia in a hospital setting. I guess my hope is perhaps it's small containable tumors, and not yet involving the lymph system), and won't suggest a RP.

As others have said - the unknowns really screw with your thinking - so work to get a determination as quickly as possible.

Anyway: MRI then biopsy is the current standard better urologists are using when DRE isn't positive.

Re: New here- looking for some guidance and support - (re. Frank)

So had the 12 needle last Monday and heading back today for the results.
Urologist has me convinced that I have metastatic PCA, so anything less than that result will be a victory at this point
I will report back with Gleason etc.
Thanks to all.

Re: New here- looking for some guidance and support

Biopsy results came back , all 12 were 9 or 10 Gleason's, all fully involved the entire length. also showed EPE and Nerve attachment -Urologist told me basically he can't "cure me", put me on Hormones, sent me for Bone Scan and CT of chest and pelvis - which I had done yesterday.
Follow up with Urologist is not for almost 2 weeks from today - this waiting and not knowing is driving us crazy.

Re: New here- looking for some guidance and support OTR 359

Those biopsy reports are frankly not good news and sounds like your cancer has spread too far for surgery as an option. Radiation may still, be an option with hormones but I am sure you will find out more from the experts on that. With that Gleason score and your given PSA this isn't something that can be postponed, you need to get on it. I know the waiting game sucks but you need all the information possible to make the best choices for yourself. As many have said, this is not a death sentence, but it IS a wakeup call that needs to be heeded. The "cure" is never a for sure option in this world of cancer but as seen on this site, bad cases can be slowed down for many years so don't give up hope. Hang in there, we are all in this together. Jon.

Re: New here- looking for some guidance and support

You have started the hormone treatment which is as good as anything to begin with and may keep the cancer under control for a few years. You now need to get into the best physical condition you can, which is very difficult once your testosterone level approaches zero. The reason to get in good physical condition is so that you can withstand the sequence of different drugs that you'll need over the years to stay alive. Some of those drugs can be quite harsh. There are always new drugs being tested and at least three new ones have come out in the last few years. The life expectancy predictors don't take into account all the new treatments so I wouldn't give them much consideration in your case.

Re: New here- looking for some guidance and support

Thank you. Can you provide any details about the drugs you are referring to?
I am currently taking Flowmax 1x day, and the hormone they prescribed is Bicalutamide.
TIA

Re: New here- looking for some guidance and support

Some newer drugs are Zytiga, Xtandi and Xofigo. You are taking Casodex (Bicalutamide)and will probably get Zoladex the next time you see your doctor. You should also tell your doctor that you are interested in phase 3 drug trials. Even if you get the placebo drug, if it turns out that the drug being tested really works they will give it to you too.

You might want to join a local PC support group. They can be a wealth of knowledge on drugs, treatments, doctors etc.

Re: New here- looking for some guidance and support

OTR589

As others have said, new therapies are in the works; ask your doc and ANY other urologist you can contact about drug trials or similar studies (I'd be full time on this if I were in your shoes).

A place to start hunting for studies is the American Urology Association:

https://www.auanet.org/education/guidelines/prostate-cancer-detection.cfm

Or the patient centric site:

http://www.urologyhealth.org/


The rapid onset and progression, well, to be 100% honest, is not good. Doing the pelvic and bone scans will let you know if or how far it has spread.

I am admittedly a pessimist in these things and completely upset it's taking weeks to get into my saturation biopsy to stage my PCa. But now that you know the picture, you can start planning for what is ahead. I struggle with the two opposites: do I really want to know the truth and minimal end of the yardstick; or do I want move forward and ignore it until I can't. I always choose to get the brunt full face report of what is the worst I can expect. That allows me to plan something I can realistically accomplish. If it happens I get a longer yardstick, well, that then is a bonus.

I say this because I had one of those optimistic urologists that said don't worry. So I didn't aggressively follow up. His optimism was to my detriment.

Once the scans are complete; ask your doc for the statistics. He has them. If he doesn't tell you - then ask another uro, find a med school with a uro department, ask there; or there are some studies online - though are hard to find and hard to read.

Another resource is the National Institute of Health.

http://www.ncbi.nlm.nih.gov/gquery/?term=prostate+cancer+outcomes

A Medscape article if they find your PCa is fully metastatic:

http://emedicine.medscape.com/article/454114-overview


And, after you have all the scans done; get copies sent to other docs and get second opinions. The right answer will likely be somewhere in the middle of what you hear.

I wish you the best,

GW

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